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Old 01-10-2016, 06:15 PM   #21
scrunchthecat
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Re: Working thread - what do you think the HER2+ standard of care should be really?

Agness - Thanks for starting this! I don't have a lot of original material to add, but I can underscore some of your points:

1. There needs to be a better understanding of, and a better communication to the patient about, the role that the lymph system plays in HER2+ cancer. I had lymphedema as a symptom of breast cancer - I noticed my arm swelling before I was diagnosed, and before I was ever treated. At diagnoses, all of the doctors - my GP, BS, MO and all of the second opinion docs - just shrugged their shoulders at my weird lymphedema. I just happened to go to a breast cancer support group 3 months in, and met my lymphedema PT. None of my doctors had suggested I get lymphedema treatment. My lymphedema PT has worked magic keeping my swelling under control, and has given me the best advice about how everything from diet to exercise to my clothing can help or hinder the flow of the lymphatic fluid. What she is less knowledgeable about, and what I wonder about is how does this draining of the lymph fluid out of my cancer-damaged lymph nodes in my right arm impact the rest of my system, cancer-wise? My latest PET-CT shows that all of the hot spots in my lymph nodes and elsewhere were resolved, but is there any problem with draining the stuff out through them? My onc thinks that dead tumor cells are essentially lymphatic fluid, and therefore lymphedema treatment is a good move because it helps the body to eliminate them. It would be great to have the connection between the lymph system and cancer clarified.

2. Agness, as you were so kind enough to respond to my question about lymph nodes and brain/leptomeningial mets, doctors and patients need a better understanding of the connection between the lymphatic system and the CNS and how to manage this connection to prevent recurrence.

3. A better understanding of the connection between HER2 and immunotherapy. First, how can we, as patients, strengthen our immune system to help fight HER2 recurrence via diet and supplements? I am going to ask my ONC to measure my Vitamin D levels, but he may refer me to my GP for this blood test. Why can't we include some kind of "immuno-panel" with our numerous blood tests? Second, we need more access to clinical trials that look to prevent recurrence of HER2 through immunotherapy. AND those trials need to be better funded for Stage IV. I know of at least two trials that are having problems raising money: One at U Washington, which has suspended the recruitment of patients, and another at UPenn that I just learned about, which is struggling to start the patients who were lucky enough to get enrolled because of a lack of funding.

4. We need a higher visibility of HER2 disease. Someone wrote on a board: There are a lot of HER2 therapies because it's so aggressive, it's easy to grow quickly in the lab and figure out ways to kill it. We need a marketing campaign aimed at eradicating death by HER2. We could make the argument that, although it touches only 20% of breast cancer patients, it is well understood enough to target for eradication. Big funding likes the idea of being able to not just help a disease, but eradicate it.
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Old 01-11-2016, 12:03 PM   #22
agness
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Re: Working thread - what do you think the HER2+ standard of care should be really?

All patients should be encouraged to, and explained about, why they should ice their hands and feet -- to prevent neuropathy. Patient equipment should include materials to aid in providing these services concurrently with treatment to all patients.
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Old 01-14-2016, 04:09 AM   #23
agness
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Re: Working thread - what do you think the HER2+ standard of care should be really?

This should be the standard with all our breast surgeons now, especially after sentinel node dissection (SND). I tapped into this early and only had three nodes removed even though I lit up like a Christmas tree when I was first diagnosed. Neoadjuvant chemo (TCHP) dissolves them all and only scar tissue was found.

Most women with early-stage breast cancer avoid extensive lymph node removal
http://www.medicalnewstoday.com/releases/291599.php

Last edited by agness; 03-31-2016 at 09:15 PM.. Reason: Typo
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Old 01-14-2016, 04:14 AM   #24
agness
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Re: Working thread - what do you think the HER2+ standard of care should be really?

In response to the post above by scrunchthecat, I told one of my docs as much - I said we are curing cancer, not all the time but a lot of the time. It doesn't change my lot but let's own that and celebrate that. It is a ground-breaking shift for HER2 disease, as we used to have one of the deadlier forms of the disease. Yes we are only 20% of all breast cancer patients (10% HER2+/HR- and 10% triple positive) but huge strides have been made with targeted therapies, a form of immunotherapy (another thing that deserves recognition).

Own it!

Last edited by agness; 01-14-2016 at 04:16 AM.. Reason: Typo
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Old 02-27-2016, 07:39 AM   #25
agness
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Re: Working thread - what do you think the HER2+ standard of care should be really?

How about mentioning the option of Foundation One testing to those just diagnosed and letting the patient decide if they want to pay for outside testing to get more info about their cancer?

It is patronizing to not even mention that there is more that could be done or learned about.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.

Last edited by agness; 03-29-2016 at 09:24 AM.. Reason: Typo
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Old 02-27-2016, 08:26 AM   #26
sonyabegonia
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Re: Working thread - what do you think the HER2+ standard of care should be really?

Absolutely! Great thought, Agness!
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Diagnosed June 2012 (Happy 50th Birthday :-/)
IDC 1.5
Lumpectomy / removed 9 nodes, all clear
Add'l surgery for clear margins
ER+/PR+ 95%
Her2+++
Chemo TCH Started August 2012
Radiation began February 2013
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Old 03-29-2016, 09:23 AM   #27
agness
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Re: Working thread - what do you think the HER2+ standard of care should be really?

I am thinking that the recent study showing that Tykerb (Lapatinib) plus Herceptin (Trastruzumab) should be used for more HER2+ patients. At least to reduce the amount of chemo given.

My blood production was permanently altered (at the low end of normal now) and doctors say it was likely the carboplatin that did it. I think finding ways to eliminate the mutant cell line without causing permanent harm to the body should be elevated in oncology treatment.

Along with a shift in treatment should come monitoring MRIs to watch the cancer dissolve. I know that just two years ago was a researcher at Seattle Cancer Care going to follow neiadjuvant patients via imaging to watch how breast cancer shut down as treatment worked. I can only assume that they are still some years out from putting this into practice with patients but it doesn't mean that we can't demand a better standard of care. Why not try and see if we can do less and track the changes rather than do more and hope it was enough?
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 03-29-2016, 05:22 PM   #28
Colleen
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Re: Working thread - what do you think the HER2+ standard of care should be really?

As a stage IV HER2 patient I was not offered a brain MRI or suggested to have one even though I had a lymph node above my clavicle involved, which was not noted in the first PET/CT but was noted in the second one 3 months later and the first one was amended. But due to having a syncope after my fourth cycle of THP I got a brain MRI via a neurologist, and a second one a few months later. Both were clear! When I asked my oncologist if she recommended them she not unless there are symptoms, I was shocked! Especially as I had recently visited with another oncologist and he said he likes all of his more advanced stage breast cancer patients to have a brain MRI at the one year mark from dx whether or not they have symptoms. A bone scan is probably not needed due to the CT and PET scans most of us get of our torsos. I do feel that advanced stage BC patients should get the best testing available on a regular basis with brain MRIs yearly. It is up to us to be our own advocates because the medical community isn't going to do it for us! I am into year three as a #lifer and feel like because I am stable I am being tossed aside by my oncologist, maybe time to find a new one?
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 03-29-2016, 10:41 PM   #29
Jedrik
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Re: Working thread - what do you think the HER2+ standard of care should be really?

Quote:
Why not try and see if we can do less and track the changes rather than do more and hope it was enough?
Don't we all wish this were possible in all cases? I'm still in therapy for stage II BC and had to decide whether to do radiation - declined that as even the radiologist indicated in my case it might do more harm than good and still have to decide about Antihormonal Therapy as, contrary to what was said initially, 2% ER (in DCIS, none in IDC of same breast) isn't nothing and has to be treated as per guideline. They hide behind guidelines, I have to decide, frantically trying to gain knowledge I need in order to make that decission.

Always "Better safe that sorry" and we end up accumulating all those side effects, some of them irreversible.

With chemo as it is now - I got the same treatment, same results and still waiting for leukos to get up to a decent level - there's the problem that's the one real problem cancer cells always pose: They learn how to grow under any circumstances because they have forgotten how to die when defect. So if they get hit with something that doesn't kill them all at once you get some live ones that easily replace those that could be eliminated by this therapy. And you end up with even faster growing cancer, now completely resistant to this therapy. Some Her2 cancers can even be radiation resistant if I understood that correctly.

For me the most promising way out of this seems to be the approach to teach the immune system how to recognize cancer cells as to be eliminated and get our own bodies to sort this out properly. It can't get any more selective than that.
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Dx 9/17/2015, IDC/Paget's, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ at age 57
Surgery 10/6/2015 Lymph node removal: Sentinel
Chemotherapy
start 10/19/2015 Carboplatin (Paraplatin), Taxotere (docetaxel)
Targeted Therapy start 10/19/2015 Herceptin (trastuzumab), Perjeta (pertuzumab)
Surgery 02/23/2016 MX Left, PMX Right
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Old 05-13-2016, 09:32 PM   #30
AMHarrison
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Re: Working thread - what do you think the HER2+ standard of care should be really?

I received my 2nd dx of brain mets nearly 2 years after my original HER2+ dx in 2014. Now I'm dealing with this and was initially offered surf/wbrt/chemo. Not keen on the wbrt so searched for a 2nd opinion and now on a clinical trial. I'll find our the prelim results next week and am hoping for another radiation therapy (stereotactic, gamma knife) besides wbrt. Too young (just turned 41), wife and mom - shouldn't be going through this. Hate cancer and can't believe my original onc did not do MRI testing on my brain to find these lesions sooner. She basically took my life away from me!!
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Old 05-13-2016, 11:01 PM   #31
Colleen
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Re: Working thread - what do you think the HER2+ standard of care should be really?

Unfortunately it appears the "standard of care" is let's wait till the brain mets are significantly symptomatic enough before we start diagnostic testing. Stage IV it should be routine! Thankfully two syncopes I can get brain MRIs if I request them.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 05-14-2016, 09:39 AM   #32
scrunchthecat
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Re: Working thread - what do you think the HER2+ standard of care should be really?

It seems that the cancer-industrial complex has some statistics about how well patients will respond to specific treatments, based on results from both IHC and the FISH test. IHC grades HER2 from 1 to 3 (where 3 is positive), and FISH uses something called the HER2/CEP17 ratio, where anything greater than 1 can be positive. There is at least one study that shows that if you have a HER2/CEP17 ratio greater than 3, you are more likely to get a longer-term remission on a first-line of anti-HER2 treatment (TH in this study, as there was no P yet), and if your HER2/CEP17 is less than 3, you are likely to have a weaker response to Herceptin.

So why are HER2 patients not made aware of this calculation? For example, it seems that, if you have a HER2/CEP17 higher than 3, you might want to continue with Herceptin paired with other therapies after your first-line treatment, and, conversely, you might want to look beyond anti-HER2 therapies if your HER2/CEP17 is less than 3.

Article is here: http://www.ncbi.nlm.nih.gov/pubmed/23673443

I am sure there are other, similar studies that could help patients in their treatment decisions. The best solution would be to have everyone's tumor sequenced. I spoke to the folks at the Metastatic Breast Cancer Project at the Living Beyond Breast Cancer conference in Philly, and when I asked whether those of us who had submitted our tumor samples for sequencing might be able to get the results of those samples, the response was: It is more likely that the insurance companies will agree to pay for tumor sequencing before we would be able to break the confidentiality of our study. The MBC project folks are quite optimistic that insurance companies will begin to pay for this soon.
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June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 05-14-2016, 09:50 AM   #33
gramen
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Re: Working thread - what do you think the HER2+ standard of care should be really?

This is a wonderful tread with useful info. Thank you!
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Old 05-12-2018, 01:25 PM   #34
scrunchthecat
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Re: Working thread - what do you think the HER2+ standard of care should be really?

So here's a new issue that has come up in a couple of cancer discussion boards recently: Why must we all receive the maximum tolerated dose? Why is that the standard of care? An article recently suggested that it might be better giving long-term patients lower doses, once the cancer is under control, to ward off resistance. (I'll see if I can find the article.)

Makes sense to me.
__________________
June 2015 - Stage IV, HER2+++, HR-. Mets to liver, assorted lymph nodes.
June 2015 - Begin THP
October 2015 - End THP, begin H&P. PET-CT shows resolution of mets to liver & lymph nodes.
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Old 05-14-2018, 04:26 PM   #35
SoCalGal
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Re: Working thread - what do you think the HER2+ standard of care should be really?

Scrunch, I think it's similar to taking advil or Tylenol. Most people need 2 tablets. But not all. The trick is to find your own sweet spot, and still get enough of the dose to be effective. This is not the first time I've heard of doing lower doses. For me, less is always more.
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-15-2018, 08:02 AM   #36
Colleen
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Re: Working thread - what do you think the HER2+ standard of care should be really?

Great article! For those of us who read this how many went running for their initial diagnosis information? I certainly did! My HER2/CEP17 ratio was <8 and I am 4 1/2+ years out from a stage IV dx and have not had a recurrence! Woohoo! However when I read scholarly articles like this I always try to consider how many times have these results been duplicated. Not to be a bubble popper here, one study is not truly conclusive, it takes repeating these results over and over again, hence why clinical trials take so many years.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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